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What to look for next? Hht, tia, pavm and extremity survivors help


#1

We are currently in the picu unit. My daughter had 2 back to back seeming tia episodes a few days ago. She had these episodes 2 years ago, an untreated pavm was thought to be the culprit and after her pavm was embolized, no problems until now. History of 2 Cavs, gamma knife in 2010. Cerebral angio today, all clear. Going for ct angio to check for pulmonary issues but dr. Seems convinced it’s nothing or it’s a behavioral/mental health issue (trying not to get angry about that one because they know nothing about hht or my child who has PTSD from and about medical procedures)
She has had knee problems, has a bakers cyst on one knee and it is very swollen and painful. So far none of the imaging studies have indicated an avm in the knee and I can’t imagine that a clot from the knee would travel to the brain and cause a Tia but I don’t know much about them.
Any thoughts, suggestions or insight?


#2

Christine,

I hope some folk in the @PulmonaryHeartHHT or @Extremity groups can offer help.

As far as I know, a TIA is a blockage of some kind that is thankfully temporary and doesn’t lead on to any tissue death, as being the distinction from an ischaemic stroke which is a more permanent blockage that leads on to some tissue death. Otherwise, I think they are both typically associated with a clot.

Hope others have useful ideas.

Best,

Richard